Implementation Strategies to Promote Advance Care Planning among Persons Living with ADRD and those with Mild Cognitive Impairment in Outpatient Primary Care Practices

Many community-dwelling persons living with Alzheimer’s disease and related dementias (AD/ADRD) and those with mild cognitive impairment (MCI) receive aggressive medical interventions within the last year of their life, despite the uncertainty about the benefit of such care to their quality of life or survival.

Studies have raised concerns that such care may not be in alignment with patients’ goals and values and may even be associated with worse quality of care. These outcomes highlight the importance of ACP early within their disease course.

Unfortunately, very few cognitively-impaired older adults actually participate in ACP while they still retain decision making capacity.

As a result, there is growing recognition that improving goal-directed care for persons living with AD/ADRD or MCI will require greater focus on ACP early in the disease course.1,2 Patient portals can be an innovative way to engage patient’s in ACP outside of brief clinical visits that are already strained and allow for easy documentation of ACP wishes.

Studies have shown that the use of portal-based ACP tools along with motivational electronic messaging is a practical and feasible way to improve engagement in ACP and documentation; but has been understudied within persons with AD/ADRD or MCI.3-8 The central hypothesis for this research proposal is that sending a user-friendly portal based ACP tool (ACPdSmart) coupled with motivational messages through the patient portal prior to a routine primary care visit will improve ACP reach and adoption among persons living with AD/ADRD or MCI.

This will be accomplished with the following Specific Aims: (1) to conduct usability testing with a user-centered design approach among community-dwelling persons with AD/ADRD or MCI and their care partner to improve the user-friendliness of the ACPdSmart portal tool; (2) to pilot-test the ACPdSmart tool within the patient portal paired with a motivational message to improve ACP reach and adoption among community-dwelling persons with AD/ADRD or MCI; and (3) to evaluate acceptability, appropriateness, and implementation barriers of the ACPdSmart intervention among adopters and non-adopters.

The PI will capitalize on an outstanding research environment and a mentorship team of experts in implementation science, clinical informatics, and qualitative analysis.

With their guidance and through didactic coursework and hands-on experience, the PI will obtain the necessary training in implementation science, qualitative research design, data collection, and analysis, and user- centered design principles to become an independent translational clinician scientists.

This proposal will lay the groundwork for an R01 to test the portal based ACPdSmart intervention in a pragmatic, multi-site, cluster randomized trial.

This Mentored Patient-Oriented Research Career Development Award (K23) will advance our understanding of effective implementation strategies to improve ACP among persons living with AD/ADRD or MCI and will be a timely catalyst for the PI in achieving the long-term goal of becoming an independent translational clinician scientist and leader in implementation science in the care of vulnerable older adults.